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remission over

myljon3@yahoo.com's picture
myljon3@yahoo.com
Posts: 9
Joined: Oct 2015

Was Diagonosed last year in August.  Went to M.D. Anderson in HOuston.  Got protocol for chemo to be taken nearer home in Atlanta.  Took 9 weeks of Carboplatin and Taxol.  Back to Houston for major tumor reduction of omentum.  Then, home for 9 more weeks of chemo.   Ca125 was 39,795 in beginning.  Went down to 8.0 after treatment and remission has lasted 10 months.  Just found out today, CA 125 is now 32.  So, here we go again.  My question is for anyone.....how long can this disease go on?  Just in my finishing my first year and is being referred to as high grade carcinoma of peritoneum with envolvement of omentum.  Can someone in similar circumstances tell me how long they have been fighting this disease and how many different treatments they have had?  Thank you for your help.  Trying to get a handle on things if possible.

Mary

Lesli814
Posts: 5
Joined: Dec 2015

You wrote: "Ca125 was 39,795 in beginning" -  Is this Correct???

myljon3@yahoo.com's picture
myljon3@yahoo.com
Posts: 9
Joined: Oct 2015

Yes.  In the beginning, my CA125 was almost 4,000.  Last one in Dec. was 32.  Since then, I have had ct scans and biopsy.  I have 3 new nodules that are cancerous.  I will be going back to M.D. Anderson Hospital in Houston Texas in a few weeks.  I don't think I will be having anymore surgery but I hope they will do something to give me some more time.  I have been in good spirits and I try very hard to keep my faith in my heavenly Father and know that when I leave here, I will be with Him.  I am more concerned about the loved ones I leave behind.  My husband of 30 years will be lost as we are so terribly close.  We have no children together and he will be alone.  I have a 6yr. old great granddaughter that loves me very much and I worry about how she will react to my passing.  But, as I said, I am hoping something can be done to prolong my life a while longer but with some quality.  God bless you and your sweet mother.

If it's any help,  I had chemo before surgery and then again after.  The  chemo before worked very well even though my markers were so high.  The surgery finished the rest off and then I had chemo again.  I had a remission for 9 months.  The nodules that I have now are very small but high grade.  It may be that if your mom opts for the chemo it wil irradicate a lot of disease.  She must eat and drink a lot of water even when she doesn't feel like it.  Hydration is key while on chemo.

  Hope this was helpful.  We will talk again.  Mary

 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

This board is a very quiet one and I feel bad you've had no replies.  I'm from the uterine board and know how comforted I am by conversing with others in my same boat.  I can't answer your questions but maybe some of the older posts here will help.  Some ladies used to cross over to the uterine or ovarian boards and I invite you to consider that.  Hope your treatment is going well.

myljon3@yahoo.com's picture
myljon3@yahoo.com
Posts: 9
Joined: Oct 2015

Thank you, Connie.  I will do that.

 

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

 Dearest Mary: 

Recently I answered Lesli814 and relayed my own experience with Peritoneal Carcinomatosis/Ovarian Cancer.  There are two entries from me at this link.  Perhaps you read it.  http://csn.cancer.org/node/299108

As I related to Lesli, I was first diagnosed at my local hospital in November of 2012.  Thinking I had a hernia, I went to the hospital Emergency room.  A CT scan indicated there was no hernia, but rather Peritoneal Carcinomatosis!  I asked the doctor to show me the actual scan on the computer.  He took me into a room full of doctors and pulled up my scan.  He began to point out NUMEROUS tumors floating around in my abdominal cavity in the Peritoneal fluid.  Immediately I started research on this cancer.  Since my husband is an Esophageal Cancer Survivor now entering his 14th year of being in remission, I chose to contact the University of Pittsburgh Medical Center.  This is where he had a successful Minimally Invasive Esophagectomy (EC Stage III (T3N1M0) in May of 2003. 

So my Christmas present in December of 2012 was a trip to Pittsburgh to have a 2nd Opinion.  Once there a PET/CT scan and exploratory surgery revealed tumors TOO large and TOO numerous to perform surgery.  It also revealed that the cancer was in my ovaries as well.  However, they didn’t erase all hope.  They said, “Go home and do chemo, and then we will conduct some more tests.”  So that is what I did the first part of 2013.  The first chemo regimen of Carboplatin and Taxol was a series of 6 treatments 3 weeks apart.  At the end of that time, the chemo had reduced the tumors to a size that Cytoreductive Surgery was feasible.  Now I knew all along that Cytoreductive Surgery was not going to be a cure, but rather would reduce the number of places where the tumors could take up a new residence.  So surgery was performed on July 1, 2013 and all “non-essential” organs were removed!   (Incidentally, I saw on one research article that the omentum is a “fat pad” that measures 20 X 15 X 2 centimeters.  A conversion chart shows 20 cm = 7.874016 inches.  15 cm = 5.905512 inches.  2 cm = 0.7874016)  That’s not exactly how I wanted to lose some fat!    

Once more in June of 2015, I began to have severe abdominal pain.  (At that time my CA-125 count was 183.)  A PET/CT scan revealed 5 new tumors and “increased nodularity along the intestinal wall.”  So I began a second series of chemo treatments of the same chemicals. This treatment ended September 25, 2015.  (CA-125 count went down to 15)  The post-treatment scan reduced the size of the tumors but did not eradicate them.

Now while my CA-125 count was never a high number like yours, it went further down to 10 on December 17th,   My visit to my oncologist on New Year’s Eve was 39 in a matter of two weeks.  I visit my oncologist in another week, and no doubt the number will have increased substantially again.  Yes a “quiet panic” sets in when you see a sudden rise in the CA125 count.  And yet, what can I do about it?  So we can feel fine on the outside yet there can be turmoil on the inside.  I don’t have as much energy as I once had, but I carry on all day, cleaning, cooking, etc.  I am not in constant pain, and my friends say, “You sure don’t look sick!”  Well, I am bald once more, but that’s no biggie.  The hair is starting to grow back and it’ll take a year.  The hair on my head is white, and that’s okay.  It’s the scraggly black hairs that are growing on my chin that’s not so pretty.  L

As for your diagnosis, you ask “How long can this go on?”  The answer, “Only God knows.”  But I am now beginning in my 4th year of survival and my case is terminal.  And a word about “terminal.”  When someone asks me how I am doing, I readily tell them that I have terminal cancer.  I’m not looking for sympathy and I, like you, am absolutely convinced that because I have put my faith in Christ, that I will be in the presence of my Lord when I exhale my last breath here on Planet Earth.  Yet some non-thinking people will reply, “Well we are all terminal.  We are all going to die sometime!”  Mary, I think that is absolutely the wrong thing a healthy person should say to a terminal cancer patient.  I often reply, “Well, it’s a bit different when YOUR name is at the top of the list!”  Reminds me of a joke I heard once.  Seems the pastor was asking the members of the congregation to raise their hands if they wanted to go to Heaven.  All but one guy named John raised their hands.  The pastor replied, “John why don’t you want to go to Heaven?”  John said, “Oh I do but I thought you were getting up a load for next week!”   

So, I like you, take great comfort in knowing my eternal destination is sure.  But, we, like so many others on this site, have loved ones that NEED us.  Yet of this one thing I am certain, that what the Psalmist says in Psalm 139 is true.  Even in the midst of this crucial and uncertain time in our lives, it doesn’t take God by surprise.  David said no matter where I go, You’re there.  You saw me when I was being "knit together" in my mother’s womb and in Your book all the days of my life were written when as yet there were none of them.  And when I begin to live days and weeks ahead, He reminds me that I’m running too far ahead.  He alone knows the number of our days.  And while we would all like to live to a “ripe old age” exactly at what point would that be when we want to leave our loved ones?  As long as we have our right minds and are in a “bearable” state of health, we would not want to depart this life.  And it would indeed be tragic if we left this life and nobody missed us, would it not?  We all want to think that our life lent meaning and purpose to others along the way.

And so Mary, I hope that when you make your next trip to Houston, the doctors will have some options that will be open to you so you can continue to enjoy the presence of your loving husband, and adoring great granddaughter.  We grandparents and great grandparents add an extra dimension to the lives of our grandchildren and great grandchildren that the parents cannot because they haven’t lived as long as we have.  I believe I am older than you.  My husband and I both have a birthday coming up on February 12th.  He will be 79 and I will be 77.  And believe me, I never thought I would be alive this long after my 2012 diagnosis.  So take heart. 

We want to be around long enough to pass along all the important truths that the younger ones need to experience in order to live a fulfilling life.  Life’s trials can make us or break us.  But God promises He will never leave us or forsake us.  Truly believing that and putting our faith in practice brings a peace that passes all understanding even in the midst of battles we would rather not have to fight.  The poem “Footprints in the Sand” says it quite well.  Yes, Mary there are times when we think we can’t walk another step.  It is then that God carries us!

May you continue to experience His perfect peace even in this troublesome time.

Sincerely,

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer

P.S.    Since I first wrote to you, I had another visit to my oncologist (January 26, 2016) .  My CA-125 count has now risen from 39 to 70 in three weeks.  (Lynn Anderson made a song famous a long time ago.  It was called "Rose Garden".)  The first line was "I Beg Your Pardon, I Never Promised You A Rose Garden..."  I've often said, "Lord You wrote that song."  That  line is one that comes to mind when dark days come.  God controls the rain and the sunshine in my life.   His shoulders are wide enough to carry both of us at the same time Mary.  We're doing all we can do.  Our times are in His hands.

 

_________________________________

 

Footprints in the Sand

One night I dreamed a dream.
As I was walking along the beach with my Lord.
Across the dark sky flashed scenes from my life.
For each scene, I noticed two sets of footprints in the sand,
one belonging to me and one to my Lord.

After the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that at many times along the path of my life,
especially at the very lowest and saddest times,
there was only one set of footprints.

This really troubled me, so I asked the Lord about it.
"Lord, you said once I decided to follow you,
You'd walk with me all the way.
But I noticed that during the saddest and most troublesome times of my life,
there was only one set of footprints.
I don't understand why, when I needed You the most, You would leave me."

He whispered, "My precious child, I love you and will never leave you
never, ever, during your trials and testings.
When you saw only one set of footprints,
it was then that I carried you."

- By Mary Stevenson


ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

i am sorry to hear this.  are you and your doc making a new plan?

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

 Hi Connie

 Yesterday I had a lab visit at Virginia Oncology.  Tomorrow I have an appointment with my oncologist.  We usually don’t rush to “try something new” at the first rise, but two big CA-125 rises in a row, can’t be dismissed.  He may suggest another CT or PET /CT scan to know where new tumors are growing, or increases in the ones already present.  After all, there is no cure.   That would be my guess, and I will go along with that. 

 I know that my second round of chemo treatments were not as effective as the first round back in 2013.  It didn’t eliminate any, only reduced them in size, and for even that I am grateful. 

 Successive chemos certainly affects one’s quality of life.  I am now entering my 4th year of survival, when I could have died much earlier, had I not had Cytoreductive Surgery in July of 2013.  After all the Peritoneal Carcinomatosis was considered Stage IV alone, even before exploratory surgery was also found cancer in my ovaries.  

 Having been a life-long realist, I know my options are limited, and that I will not “try anything” to stay alive for a longer period of time, if there is no “quality of life.”  My husband and my family both agree that I must make the decisions about when enough is enough.  I’m in a constant prayer mode as what decision the Lord would have me make.  Tonight, I have no idea as to what that will be, but I certainly will let you know.  Thanks for asking Connie.

  Loretta

 P.S.  Here is a great article by MAYO Clinic referencing the subject of Stopping Chemo—when is enough enough? 

 http://csn.cancer.org/node/299199

 STOPPING CANCER TREATMENT: DECIDING WHEN THE TIME IS RIGHT

  I have read this more than one time.  It has to be a question we all face with repetitive chemos and no real improvement.  I have shared it on the Esophageal Cancer link because of my husband’s Esophageal Cancer, Stage III (T3N1M0) diagnosis back in 2002.  God is a God of miracles, and He has certainly given us one as relates to my husband.  And in my own life, even I consider entering Year 4 with a good quality of life is a miracle as well.  

 

jallen3050
Posts: 1
Joined: Mar 2017

Hello Loretta, I read your post and it brought tears to my eyes. Where you first thought you had a hermin and went to the emergency room I saw me standing there. That was the exact same thing I did.I went to the emergency room May 23, 2016 and was given the diagnosisa few hours later I had Stage 3  Peritoneal Carcinomatosis Cancer.  I have always been healthy so I kept ignoring the pain thinking it would go away. And when it didn't I just figured it was a hernia and I come get it fixed and go on. I was always taught never to ASSUME, but I did it anyway. I did 3 treatments three weeks apart of Carboplatin and Taxol, then had surgery in August  and my surgeon took out everything excepy my gallbladder. Then I had 3 more rounds of chemo. I was very blessed because I did not get sick one time during any of my chemo treatments. It did make me feel wore out and very tired for about a week after each treatment. I saw my surgeon in December and things looked good. I had CA125 done it it came back 11.9. Then in Feburary I went to see my chemo doctor. He said my numbers in October were 5 so it had doubled but he didn't seem to be concerned. I did tell him I was have some pains again but they were consistent . He just kind of blew that off. As time went by I knew something wasn't right. I was starting to have the same pains as before that I had ignored. Due to the fact I knew my cancer would return, I called my surgeon's office and talked to his nurse Chris. She had me go get my CA125 again and right now it is over 800. I have an appt. to see my surgeon next Friday and he's gonna have a CT Scan done at the Zangmeister Center . I would be lying if I said I wasn't worried because I am terrified . But with that being said, I'm a fighter and I'm not going to let Cancer define me. It slows me done a bit but I'm getting ready to turn 60 on March 29th and it's not like I'm 20 anymore anyway. Thank you for your post . I will update my results.

bettyboop3917's picture
bettyboop3917
Posts: 45
Joined: Dec 2016

I am from the ovarian broad. Yet a lot of what your talking about sounds like what I have been dealing with. I was so ready to give up. I sounded much like you. I found a reason to fight. So I had surgery last month. While all the cancer could not be removed do to it's every where in my abdomen. At the time of surgery a intraperitoneal (ip) chemotherapy port was put in. After we had talked it over about this being the best way to do the chemo this time around. I do hope you find your reason to fight. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2589
Joined: Mar 2013

Mary, jallen, and bettyboop, please be sure to let us know how you are doing.  Keep fighting.

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